From Medical Condition to Political Condition: The Story of the ADA

IN JULY 2015, I went to Washington, DC for a week of events celebrating the 25th anniversary of the signing of the Americans with Disabilities Act of 1990. As a professor who has taught disability studies for 20 years, advocated for disability justice, and as someone with a disability myself, I thought I knew a lot about all aspects of the issue. But that week in Washington, DC was a revelation.

The events I attended comprised a kind of pageant, a political ritual, that honored the Americans with Disabilities Act by telling the now of the ADA in order to pay homage to the then. The opening act of this performance was the White House reception on July 20, where President Obama gathered over 400 leaders and advocates of disability rights to applaud the passage of that momentous civil rights law. The leaders came from every constituency of disability politics, culture, business, and advocacy. We were important-looking people in business suits, clearing security confidently, and networking with practiced ease. I saw everyone I’d ever met or heard of in disability leadership in my 20 years as a professor and advocate. Our disabilities and our technology proliferated: people signing energetically, service animals sniffing one another warily, SUV-sized power wheelchairs, stylish sport wheelchairs, chic canes, crutches, small people, asymmetrical people — all manner of shapes, sizes, and styles of getting about and connecting with one another. We greeted and gathered in our distinctive ways: the Deaf waving heartily; the blind tarrying to listen for shout-outs; others reining in our dogs; many zipping through in chairs; many listing, tilting, and scrabbling with our bags; and everyone behaving oddly in the world’s judgment.

For most of us, getting through an ordinary day with our unusual bodies is a solo event. At our jobs and even at home, we are often the only ones in the room, perpetually doing the work of navigating a world not built for us. But there at the White House, we were being honored at the symbolic center of American politics and power. I’ve never seen so many of us together outside of an independent living center or a care facility.

That a White House reception was being held in honor of disabled Americans was symbolic. White House receptions are competitive, and the presence of both the president and vice president at the reception sent a message of support for disability rights and disability diversity. I’d been to the protest rallies, pride parades, and independent living centers — always jeering or cheering from the outside. But this was a completely different version of participation in disability advocacy and leadership. In the White House women’s room foyer, for example, portraits of first ladies ranging from Eleanor Roosevelt to Lady Bird Johnson hang. The room was packed with wheelchairs, service animals, and all manner of disabled people clicking pictures of one another in front of the splendid portraits. I was chatting up colleagues I hadn’t seen in years. My friend John Kemp, an attorney and chairman of the Viscardi Center, a dignified man who looks like James Bond and is a quadruple congenital amputee, was riding his grandson around on the motorized scooter he operates with his two split hook prosthetic arms as the stately First Ladies gazed with calm astonishment from the walls. I bet they’d never seen anything like all of us there together.

After the champagne, the string quartet, and the tasteful hors d’oeuvres, we gathered to await the entry of the president. The entourage began stealthily with the ever-vigilant Secret Service, then mounted toward a procession of dignitaries led by Senator Bob Dole, a disabled World War II veteran, attended by assistants who guided his shaky but sure rise from his wheelchair to the podium alongside the president. Following Dole was Vice President Biden, who eagerly greeted everyone and shook every hand that he could reach. And then came the only woman in the procession, my friend and colleague Haben Girma, who had been selected to introduce President Obama. In 2013, Girma, a first-generation American from an Eritrean family, became the first Deaf-blind person to graduate from Harvard Law School. She went on to work as an attorney in Berkeley at Disability Rights Advocacy, bringing forward ADA cases, and as a public speaker about disability inclusion and rights. She uses an array of accessible technology, including a guide dog, a braille reader, microphones, and describers. Later in the evening, Girma charmed an astonished President Obama as he conversed with her by typing into her braille reader as she replied by typing back onto a text display screen.

Haben Girma was the perfect symbol to lead Barack Obama into a roomful of disability leaders. She is a living emblem of how the disability rights movement and the laws it helped enact changed who participates in the privileges and obligations of citizenship. Girma’s role linked the generation of lawmakers, leaders, and advocates who made the ADA with the generation of people with disabilities who came into maturity with the opportunities afforded by the ADA.

Only a decade ago in my work as an educator, I knew graduate students who quit their studies because they couldn’t get the full accommodations they needed to be successful and faculty colleagues who retired too early because the environment made it impossible for them to continue. Before the ADA, a Deaf person like our Emory University graduate student, Rachel Kolb, would not have been able to become the first Deaf Rhodes Scholar.

When President Obama stepped up to the podium, he honored ADA supporters Senators Bob Dole, Lowell Weicker, and Tom Harkin. He remembered Ted Kennedy, and he credited the generation of disability rights leaders in his administration, such as Judith Heumann. Then the president recognized the newest generation of White House disability leaders, among them my former student Maria Town, now the associate director of the White House Office of Public Engagement and the organizer of the White House event. He also called out Leah Katz-Hernandez, the Deaf White House schedule keeper. There were many more members of the new disability leadership in the audience — people such as Cheri Blauwet, a wheelchair-using Harvard-trained doctor and Paralympian, and her husband Eli Wolff, a partially paralyzed soccer Paralympian and leader of Power of Sport and The Inclusive Sport Initiative. Present as well were government workers such as Claudia Gordon, the young black Deaf woman who serves as OFCCP’s chief of staff at the US Department of Labor. There were disabled business leaders such as Kathy D. Woods, an African-American fashion designer who makes professional clothes for small adults. These post-ADA leaders collectively witnessed the promise of the ADA together with the concurrent civil rights movements that opened pathways for women and people of color.

The president spoke with conviction about the ADA’s broader successes, but he really came alive when he began to tell the story of his father-in-law, Fraser C. Robinson III, who lived with a diagnosis of multiple sclerosis from the time he was a young man. Michelle Obama’s father, the president told us, had worked so hard to overcome barriers he faced that he couldn’t bring himself in old age to use a wheelchair or to identify as a person with a disability. What the Americans with Disabilities Act made possible is a change in attitudes, a lessening of the stigma that people such as Robinson had to face. We disabled people are now everywhere, included in the fabric of public life throughout the United States. Justice and equity are not available for all of us yet, but people such as President Obama’s father-in-law can flourish as proud citizens.

The parade of ADA dignitaries at the Department of Justice displayed one of the exceptional aspects of the ADA legislative process: the making of the ADA might very well have been the last truly bipartisan effort on Capitol Hill. There was a wistful nostalgia about bygone days of harmony and shared moral purpose among the legislators who forged the ADA. Ted Kennedy’s commitment, arising from his sister Rosemary’s developmental disability and his son’s cancer survival, animated every account. Senator Bob Dole told his ADA story from a wheelchair, recounting, with great dignity and wit, his recovery from serious wounding by German machine gun fire in World War II, his struggle to enter politics as a disabled man, and the negotiations and compromises that produced the ADA. Democrat Tom Harkin, who has a Deaf brother, spoke of his own disability resourcefulness in using one access feature for another access solution. The new movie theater eyeglasses with built-in captioning for Deaf patrons aid aging moviegoers like Harkin as well, he wryly explained: he can make frequent trips to the men’s room without missing any of the movie. Harkin’s charming coming-out-as-disabled story served as a parable: access features serve us all, and we will all join the community of the disabled at some point in our lives.

I applauded with my own adapted version of Deaf handclapping, the one where you wiggle your hands with restrained enthusiasm above your head. Because I have one hand, it is awkward and ineffective to try to make two-handed auditory applause. The silent spectacle of this Deaf waving ovation had deeply impressed me when I visited Gallaudet University, and I took it up for myself, both in solidarity with my Deaf colleagues and as an adaptive one-handed gesture of applause that fit my body just right. Before I learned Deaf applause, I had tried the violinist’s one-handed acoustic thigh slap, but it was weak on exuberance and hard on my thigh. The Deaf gesture allows me to claim that my adaptive applause is the sound of one hand clapping. Nonetheless, legibility is a problem; this visual rather than auditory gesture of appreciation is immensely effective amid an audience of people familiar with this Deaf practice, but in a hearing-majority audience, I am taken as a rude interrupter, an overzealous inquirer, or a madwoman. At the ADA celebration at the Department of Justice, however, I was recognized for exactly the one-handed clapper I was. Among the audience gathered in the Great Hall of Justice, what would be an eccentricity or an occasion for mutual discomfort in the usual nondisabled majority settings in which I spend my life went completely unremarkable. The symbolism of the event overtook me. The ADA moved our communities from hospitals and asylums into public spaces dedicated to political and social justice. We were no longer hidden or shut away because of someone else’s sense that our ways are inept or our presence shameful.

The post-ADA generation who participated in the DC celebrations have lived lives in a transformed world. The four goals of ADA were full participation, equal opportunity, independent living, and economic self-sufficiency. Many people born into the attitudes and the accessible world that the ADA helped create have gone to desegregated schools; they have ridden on accessible busses and trains; they have seen captioned movies and television programs; they have used technology ranging from wheelchairs to smart phones and prosthetics to navigate a public world that used to be designed and built only for nondisabled citizens. At an ADA panel at the Smithsonian, a young man with significant quadriplegia in a high-tech motorized wheelchair talked about how his school’s accessible built environment and the Individuals with Disabilities Education Act (IDEA) made possible his degree in computer engineering. A young blind man explained to us with a skillful mixture of sincerity and irony how his blindness helped him cultivate his love of music as a teenager by rescuing him from the usual distractions of video games and basketball.

This access to education, along with supports such as transportation and adaptive technology, has given us a generation of young disabled people with robust intellectual, economic, and physical capital. Nowhere is this clearer than among disabled athletes, who benefited from IDEA, ADA, and Title IX, the federal mandates that enabled people such as Cheri Blauwet to go to public schools, graduate from Stanford Law School, work at Harvard Medical School, and win seven Paralympic medals in wheelchair racing. Moreover, the desegregation of public and private institutions that the ADA mandated has encouraged many Paralympic athletes to press the International Olympic Committee to integrate disabled athletes into the Olympics.

ADA tributes continued at the Kennedy Center Gala, which had as much dazzle as the Oscars. The evening’s glittery MC was Nicole Kelly, a recent Miss Iowa, who is a standard beauty queen except for her one short arm not unlike my own. Special acknowledgments went to Jean Kennedy Smith, who founded VSA, and Maria Shriver, the daughter of Eunice Shriver, who founded the Special Olympics. Judy Woodruff, co-anchor of the PBS NewsHour and mother of a disabled child, moderated a panel of dynamic artists with disabilities, including J. P. Illarramendi, an actor with Down syndrome who starred in the documentary Keep On Keepin’ On, and Maysoon Zayid, a comedian with cerebral palsy whose 2014 TED talk has topped eight million views.

Perhaps the most effective testimonial came from the distinguished duo of Deaf attorney Jeff Rosen and little person Rebecca Cokley, both heads of the National Council on Disability (NCD) and important diversity leaders in several administrations. Rosen used his native language, ASL, to tell about his family heritage of three generations of Deafness, a cultural and genetic inheritance that is a great source of pride. The Rosens are the Kennedys of Deafness, the aristocracy of a community with a long and honorable tradition of language, culture, and identity. Rebecca Cokley spoke of her family legacy of dwarfism, of her pride and delight to be the daughter of dwarf parents and the mother of dwarf children. Both Rosen and Cokley underscored their family’s intentionality in continuing a line of hereditary distinctiveness understood as desired advantage rather than genetic error. Not only did Rosen’s and Cokley’s honoring of their heritage starkly counter the present medical imperative to eradicate Deafness and achondroplasia, but they called up the ghosts of eugenicism, perpetrated both by the Nazi regime and through so-called public health initiatives throughout the Western world in the 20th century.

An exhibit at the Smithsonian Institution National Museum of American History, “The Disability Rights Movement,” provided an artifact history of what the ADA and preceding laws literally made, highlighting the transformation of the built environment arising from federal regulations such as the Architectural Barriers Act of 1968. These federal mandates provided an occasion for architects and designers to devise aesthetically elegant and functionally ingenious solutions, such as the ramps all of us use for our bicycles, skateboards, rolling suitcases, strollers, Segways, and wheelchairs.

The Smithsonian also commemorated the transportation revolution ushered in by these laws with the ADA 25 Legacy Bus and Disability Rights Museum on Wheels, honoring the spirit of Justin Dart, a wealthy wheelchair-using cowboy-hat-and-boots-wearing mover of the ADA. The legendary Bus, driven by disability rights photographer Tom Olin, traveled the United States last year recreating the 144-mile Stolen Lives March from Philadelphia to Washington, DC. On display were Olin’s iconic images of the 1990 “Capitol Crawl” protest, when activists put aside their wheelchairs and crutches and crawled up the steps of the US Capitol. In the 1970s, the struggle for fair access to transportation was spearheaded by ADAPT, Americans Disabled for Accessible Public Transit, a grassroots organization of disabled people, many of them Vietnam vets.

The Smithsonian also showcased disability arts with a film festival and events by disabled performers. Actor Mat Fraser, a kind of Brad Pitt with short arms, offered an original one-person performance piece called “Cabinet of Curiosities: How Disability Was Kept in a Box.” Fraser, who starred in the American Horror Story “Freak Show” season — has, along with star Peter Dinklage, the small-statured sexy hero-villain of Game of Thrones — emerged as a rare disabled heartthrob.

We had gathered to celebrate the success stories of the ADA, accounts of how the law has made life better and more just for many Americans. Nonetheless, in the background of every event was an acknowledgment of the inherent limitations of implementing change in modern liberal democracies. Equal justice under the law is an aspirational ideal embedded in the very structures of democracy, but the system must always fall short of that ideal. In truth, disability rights legislation has not fully assured disability justice in the United States. That’s clear at a moment’s glance at public spaces in Washington, DC — or any other American city. I’ve recently moved to California, a state with one of the largest homeless populations, which are served most poorly by the ADA. Discrimination, unemployment, lack of access to resources and services, exclusion, incarceration, racism, sexism, and early death disproportionately affect people with disabilities. Furthermore, many Americans do not know how or cannot use the ADA or other civil rights legislation. Those of us best positioned to benefit from the ADA have accumulations of social and economic capital that make it possible for us to do so. The next stage of this sweeping justice movement is to enable all people to effectively access the world transformed by the ADA.

So how do we spread the success story of the ADA beyond the halls of justice in Washington, DC? The answer, of course, is through the most vibrant and nimble arm of liberal democracy — the free press. One exemplary effort is Lennard J. Davis’s Enabling Acts: The Hidden Story of How the Americans with Disabilities Act Gave the Largest US Minority Its Rights— brought out by Beacon Press on the occasion of the ADA’s 25th anniversary and now available in paperback.

A hybrid of popular history, investigative reporting, and celebrity biography, Davis’s book lays out the processes, people, compromises, strategies, negotiations, and power struggles that transformed people with disabilities from recipients of rehabilitation to recipients of rights. Enabling Acts is also the story of how unlikely coalitions can take up the democratic political process to literally reshape the public sphere and the shared assumptions of the national citizenry. Lawmaking, Enabling Acts shows us, involves scrupulously guarded backroom negotiation, which goes on at the same time as a public ceremonial spectacle broadcasting what the new law will do.

Enabling Acts is Davis’s debut as a popular historian. His more academic disability studies books range from Enforcing Normalcy: Disability, Deafness, and the Body and The Disability Studies Reader to Obsession: A History, while his memoirs include My Sense of Silence, which tells the story of his upbringing as a CODA (a child of Deaf adults), and a book of his parents’ correspondence, Shall I Say a Kiss?: The Courtship Letters of a Deaf Couple, 1936-1938. His credentialing as a senior professor of English and disability studies at the University of Illinois at Chicago, his nondisabled status, and his proximity to disability culture and community, position him as an ideal investigator and cultural critic to buzz in and out of the activist and legislative circles of a generation ago, snooping out the “hidden” history of the ADA.

Davis enlivens what could be the dry account of deal making and favor exchanges with saucy details. We discover much about Justin Dart’s weird eating habits, Berkeley activist Pat Wright’s romances, patrician Boyden Grey’s bridge games, Senator Orrin Hatch’s tears at the ADA signing, Senator Harkin’s speech in ASL, as well as the trust funds people like Mary Lou Breslin and Evan Kemp brought to the cause.

The “hidden” story sometimes sits uneasily with the official story. Davis tries to helps us through the “Too Much Information” dilemma endemic to both history and exposé by organizational schemes, appendixes, and meta commentary that make sense of the “largest civil rights legislation of the 20th century.” The ADA emerged, Davis tells us, from a convergence of three DC groups who had little in common except a shared investment in disability justice. The “cast of characters” — one useful appendix — ranges from flamboyant to bland, from insider to outsider, from the disabled to people my colleague Paul Longmore called “the severely able-bodied.” First were the politicians — powerful men like President George H. W. Bush, Senator Kennedy, Senator Harkin, Senator Dole — all of whom had disabled family members or were disabled themselves. Next were the DC insiders, including whip-smart staffers like Bobby Silverstein, who drafted one version of the ADA; high-powered movers like ACLU lawyer Chai Feldblum; expert lobbyists like Liz Savage; and heads of organizations such as Lex Frieden, who directed the National Council on Disability, or Ralph Neas, director of the Leadership Conference on Civil Rights. Finally, there were the activists, like Judy Heumann; Disability Rights Education and Defense Fund founders Pat Wright, Marilyn Golden, and Berkeley lawyer Arlene Mayerson; and with the paraplegic Vietnam vets from ADAPT.

While I was getting the ADA scoop by reading Davis’s book, I was also getting an earful about the “hidden” history of the book itself from the ADA insiders I was meeting at the White House, the Department of Justice, and at various DC meeting places. The story was just about as juicy. The conversation over drinks and hors d’oeuvres would go like this: when I introduced myself as an educator, I would be asked whether I knew this Davis fellow who had interviewed my interlocutor on the phone. It was immediately clear whether people viewed their own appearance in the book favorably or unfavorably by the way they described Davis. There was either praise for his unbiased accuracy, rants about who and what he left out, or denunciations of his scandal sniffing. A few of the more garrulous people I chatted with were happy to call Davis names that can’t be printed here. Whether they thought of him as Carl Bernstein or Garry Wills, most everyone had a strong response either to Enabling Acts itself or to its resourceful author.

One of the hidden ADA stories involves who actually wrote the legislation. This means, of course, who gets credit for writing the ADA. Unlike the Declaration of Independence, authored in Thomas Jefferson’s hand with edits by Benjamin Franklin, the ADA arose over time from an accretion of authorship. The ADA signing ceremony on July 26, 1990, was the largest ever in the White House Rose Garden. Like a royal coronation, the ceremonial choreography involved a strict seating arrangement, a VIP section, and inevitable snubs. On the platform, dignitaries ranged from Vice President Dan Quayle and First Lady Barbara Bush to Justin Dart in his cowboy hat and the Reverend Harold Wilke, an armless theologian who had studied with Paul Tillich. However, no Democrats or women leaders behind this bipartisan legislation were near the podium. President Bush’s speech acknowledged the strains in the coalition between business concerns about unfunded mandates and social justice concerns about inclusion. He compared the ADA to the fall of the Berlin Wall. DREDF was recognized; the ACLU was ignored. Pat Wright, the social justice activist who had insisted that “all groups need to be included” in the ADA was invited but seated in the 55th row; Senator Kennedy, seated up front, joined her in a gesture of liberal solidarity. With 3,000 invitations and 1,500 VIPs, some US senators and disability rights leaders were left out in the cold, just as they were at the 2015 White House reception.

A few days after that 2015 reception, the Washington Post ran an article titled “Why I Wrote the Americans with Disabilities Act” by disability rights scholar and legal advocate Robert L. Burgdorf Jr. Burgdorf’s story summarized the accomplishments of the law and echoed one of the main nostalgic themes of the celebratory week’s events: that the ADA was a model of “bipartisan congressional cooperation.” In a final tribute, Burgdorf offered his own list of credits, some of whom President Obama had mentioned at the White House reception. What goes unsaid in the article, of course, is that Burgdorf was infrequently mentioned at the events and was not in attendance at the invitation-only White House reception.

Burgdorf’s article is only the most recent alternative history of the ADA. Most prominent is journalist Joseph P. Shapiro’s 1993 book No Pity: People with Disabilities Forging a New Civil Rights Movement, which ends as the ADA begins. Historian and former National Council on Disability (NCD) chairperson Jonathan M. Young offered a DC insider’s account in Equality of Opportunity: The Making of the Americans with Disabilities Act, which was reprinted in 2010 by the NCD. One can find less DC-centered accounts of disability rights in Richard Scotch’s 1984 book From Good Will To Civil Rights: Transforming Federal Disability Policy, which was updated in 2001 to include the ADA, and Doris Zames Fleischer and Frieda Zames’s The Disability Rights Movement: From Charity to Confrontation (2001), which was updated in 2011.

Enabling Acts distinguishes itself from these previous histories by capturing the official and the stealth story of who did what in the enigmatic Washington, DC political process that turned an idea — a grievance, a cause, a commitment — into a law. What the ADA accomplished was to literally make people with health disorders into equal citizens under the law. Its mandates and restrictions constituted a protected group of rights-bearing people who were now legally understood as disabled. The ultimate work of the ADA was to transform disability from a medical condition to a political condition.